Living With Symptoms No One Could Explain

Around 42 years ago, when I was 18, I crashed a CBR 600 motorbike at around 80mph straight into a ditch. Looking back, the ditch probably saved my life. I ended up trapped underneath the bike, battered and in pain everywhere. Nothing felt broken, but my hips, neck and knees took the brunt of it.

I’d had a few beers, was still only on a provisional licence, and back then you just got on with things. I somehow dragged myself out of the ditch and got to my aunt’s house because I knew she wouldn’t report me. Her answer to the pain was a cocktail of gin and some tablets from the 60s, long before Prozac and modern medication.

That was the beginning of a lifetime of punishment on my body.

Since then I’ve worked in heavy construction, rope access, and physically demanding jobs all over the world. I lived hard too — parties, drugs, booze, long nights, little sleep. I don’t hide any of that because it’s part of my life and part of my story.

Friends later told me they had noticed tremors and blackout moments years before I properly accepted something was wrong. At the time I brushed it off because I had lived such a hard partying lifestyle for years. I convinced myself it was stress, exhaustion, drink, drugs, overwork, or simply age catching up with me.

Then things started becoming impossible to ignore.

In around 2006 while living in South Korea, I was riding a small 90cc Honda bike when suddenly my right leg completely locked solid. The bike went out of control instantly. My leg stayed rigid for what felt like forever. I remember intense electric shock type pain running through it, then suddenly the leg went totally dead with no feeling at all.

It terrified me.

When I returned to the UK in 2008, I was working a rope access job in Scotland when the exact same thing happened again. This time it nearly killed me. My leg locked solid for around 15 to 20 minutes while pain ripped through it like electric current.

From that point on, the leg locking episodes became more regular — sometimes five or six times a year.

I also started getting severe attacks in my calf muscle while asleep. The muscle would suddenly turn rock solid, almost like a brick, and feel red hot to touch. The pain was unbelievable and the episodes would often last around half an hour before slowly easing off.

Over the years more symptoms appeared.

In around 2011, after years of living with constant pain, muscle issues and physical problems, I decided to try cannabis as an alternative to prescription medication.

To my surprise, it worked far better for me than anything doctors had ever prescribed.

Over time I moved onto FECO (Full Extract Cannabis Oil), and the difference it made was huge. It doesn’t magically remove all of my symptoms or cure what is happening to me, but it dramatically reduces the intensity of the pain and many of the physical issues I deal with daily. Instead of constantly feeling overwhelmed by pain levels, it makes things far more manageable and bearable.

Today I use cannabis daily in different forms including vaping, smoking, edibles, tinctures and balms depending on what symptoms are affecting me most that day.

When I go without it, the difference is severe. My pain thresholds become unbearable, my body tightens up, and many of the symptoms become significantly harder to cope with.

Because of how much relief it gives me personally, I no longer use pharmaceutical pain medications at all. Cannabis has become the one thing that consistently gives me some level of physical relief and helps me function through daily life.

I know opinions around cannabis still divide people, but I can only speak honestly about my own experience. For me, it has genuinely been one of the biggest tools in managing the physical side of what I live with every day.

Then came the tremors.

At first they were occasional, but every major episode seemed to leave something new behind afterwards.

Before the major tremor episodes became severe, I honestly wasn’t even fully aware I was blacking out. Friends had mentioned over the years that they’d seen me “go away” at times or lose track of things, but because of the lifestyle I’d lived — hard partying, little sleep, drink, drugs, working myself into the ground — I always blamed that instead of believing something neurological could actually be happening to me.

Eventually I reached a point where, because nobody was giving me answers and every appointment seemed to end with confusion or shrugs, I almost gave up trying to understand what was happening to my own body.

Then came the huge tremor episode this year.

The attack lasted around four and a half hours and was unlike anything I had experienced before. This time I wasn’t aware or in control properly at all.

If my girlfriend had not been with me that day, I genuinely believe I would have come around afterwards simply thinking I’d had another bad spell or rough night and carried on ignoring it like I always had before.

But she saw everything.

She documented it, filmed it, took notes, stayed calm, and most importantly she made me finally realise this was serious and needed properly investigating.

For the first time in years I felt like somebody was truly listening, fighting in my corner, and refusing to let me simply brush it all away again.

That kind of support changes a person mentally.

When you spend years feeling lost inside your own symptoms, having someone step into the middle of that chaos with genuine love, compassion and determination is something I honestly cannot fully put into words.

I don’t think she realises how much she may already have changed — or even saved — my life.

After that major episode I lost a lot of strength and control in my left hand. For over a week I could barely close it properly. Even now it’s strange — it’s like my brain is telling my hand to move but the signal arrives late.

Since the last major tremor attack I’ve also developed a stutter, something I never had before in my life.

I’m also now getting severe cramping in both hands which makes picking things up difficult at times. Some days even basic tasks suddenly become frustrating.

Today, after being forced to attend a Restart appointment despite having multiple sick notes and ongoing medical evidence on my Universal Credit journal, the stress alone triggered another severe episode. My right side started violently shaking again before I’d even settled down.

Over the last six months I’ve had three MRI scans, seen three occupational therapists, and still nobody has been able to properly explain what is happening to me. The answer I keep hearing is:
“We don’t know.”

That in itself becomes mentally exhausting.

After doing huge amounts of research into my symptoms, my girlfriend and I realised I match around 26 recognised symptoms linked to Functional Neurological Disorder. We’ve also looked into other neurological conditions, including Multiple Sclerosis, and many of those possibilities appear to have been ruled out through scans and testing.

I’m now due to see another neurologist who is going to discuss the possibility of FND properly with us and arrange further testing, including the EMG test that was first mentioned years ago but never happened.

The truth is, although I desperately want answers, deep down I feel in my heart this may well be FND.

And that’s the frightening part.

Because from everything I’ve researched, there often isn’t a simple fix, cure, or operation waiting at the end of it all. It’s learning to live with a body that no longer behaves the way it should while trying not to lose yourself mentally in the process.

What has kept me going through this recently is the support of a truly wonderful person who stepped directly into this chaos with me. Someone who has taken all of this on board with compassion, patience, and genuine passion for helping me understand what is happening.

I honestly don’t think I can ever thank her enough for that.

At this stage I still don’t pretend to have all the answers. I’m not writing this as a diagnosis. I’m writing it because I know there are thousands of people out there experiencing frightening neurological symptoms while feeling ignored, dismissed, or left fighting alone for answers.

Current Symptoms & Relevant History getting worse after every tremors episode

* Body tremors and violent shaking episodes

* Stuttering and speech problems

* Blackout episodes / loss of awareness

* Severe fatigue and exhaustion

* Daily falls and balance problems

* Weakness in legs and limbs

* Right-sided drop foot progressing into left foot involvement

* Walking difficulties / abnormal gait

* Legs locking up and becoming difficult to move

* Muscle cramps and spasms

* Left torso cramping and tightness

* Hands cramping closed, affecting grip and picking things up

* Muscles tightening and feeling “electric”

* Constant spinal/back pain

* Always feeling cold

* Numbness and altered sensations

* dystoniae / abnormal posturing and limb movement

* Episodes of vagueness / confusion

Relevant Medical / Personal History

* History of severe childhood trauma and Post-Traumatic Stress Disorder following ………. when very young

* Major motorbike accident at 18 involving neck, hips and knees

* Further motorbike crash in South Korea in 2006

* Right leg first locked up following the 2006 crash, with recurring episodes around 5–6 times per year since

* Ongoing neurological investigations with suspected Functional Neurological Disorder